The stories of patients, families, partners, friends, scientists and health care professionals are quite compelling – and underline that we have a long way to go toward more systematic patient involvement across our health ecosystem. That can only be achieved through appropriate collaboration, commitment, and connection.
There were never enough of us activists, but we seemed to be wherever a politician was making a speech or opening a new neighbourhood centre or celebrating an event, etc. We were rarely quiet and respectful. We were constantly protesting, dying in the streets, planning disruptive events. Not only were there no treatments, there was no respect towards the people with the disease. Things have changed dramatically since then.